When a Stranger on the Other Side of the World Led Me to My and My Sons’ Rare Diagnosis

On November 30, 2010, I wrote a letter to a complete stranger who lived on the other side of the world.

The details of that significant moment have been engraved in my memory.

It was a moonless night and I was alone with my mind. I sat in my mother’s house in a lonely part of a rural town in southern India. A splotchy cherub weighing less than six pounds sighed soundlessly in his wooden crib next to me.

There was a stillness in the house, but not the type of stillness that one had come to expect with the coming of nightfall. It was the sad quietness that hangs in the air after a deeply enjoyed joy is lost. It was the disconcerting silence that comes when your world is simply too full to talk about.

We had travelled far and wide when we found out at 4 months old that my son Jahan was not growing as per the charts and that in all probability he, along with Arshaan, his older brother (2 years old at the time), had inherited a skeletal deformity — yet unknown — from me, his mother.

Neena, her husband and their sons, Arshaan and Jahan.

The news was like bright rays of sun searing my eyes, exploding storms. Did the boys really have a devastating medical condition that committed me to a misdiagnosis? I raced to find answers. In my blindness, I groped at endless hours with skeletal experts the world over. The reply was always the same: “We don’t know what’s going on with your boys.”

Exhausted and vulnerable, I was worn. Like a festering wound that refused to heal, I was powerless to stop my boys from being poked, prodded, X-rayed, scanned and investigated.

The lab results from that morning lay in a manila envelope on the work desk. I picked it up and went through them for the hundredth time. Both boys had turned up an anomaly in their parathyroid hormone (PTH). I decided to Google every condition that presented a PTH abnormality.

It was almost 4 a.m. when a random click took me to Dona, a mother in Mississippi.

I‘ve always lived life feeling restless, like I’ve never really met myself yet. There are no words to describe that kind of “alone,” except you spend your days unknowingly looking for that missing piece to complete you.

That November night, a little boy’s smile reached out from the tiny screen and warmed something dormant deep within me. My tired eyes embraced with a warm tenderness the “bizarre calcium levels,” “bulbous joints,” “protruding eyes” and the “shattered-glass skeleton.” And in that moment of supreme stillness, my heart leaped. After 32 years of searching, I finally found myself.

I closed my eyes and cried.

A few weeks after my fated discovery of Dona and her precious boy Levi, my boys and I got our diagnosis of Jansen type metaphyseal chondrodysplasia, a form of dwarfism so rare there are only about 20 known cases worldwide. But more than a diagnosis, I believe the divine moment crafted by the Supreme Being unleashed the sacred dew drops that spoke eloquently of grief, sadness and boundless love. Hope was quickly born from knowing the things that Dona had deep and buried in her were also deep and buried in me. I had known my stranger my whole life.

Living with an extremely rare disease can mean never fully sleeping at night. Finding Dona and Levi, my stranger, was my morning. My soul is alight. Like a freshly awakened flower, I feel I am painted anew with God’s golden brush.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Neena Nizar is an English professor who lives in Elkhorn, Nebraska. She is happily married to Adam Timm and has two boys — Arshaan Adam, 7, and Jahan Adam, 5. Arshaan and Jahan both have Jansen’s metaphyseal chondrodysplasia (JMC), a rare skeletal dysplasia they inherited from Neena. JMC affects less than 22 people worldwide.